Abstract：
Children with neuromuscular weakness or central hypoventilation often require nocturnal ventilation. Children with these conditions are living longer and the numbers of children affected are increasing. The challenges associated with managing ventilation at home have been documented; however, there has been limited investigation into accessing wider experiences such as travel. Air travel, in particular, may be considered challenging for children with these conditions because oxygen levels are lower in airplane cabins than at sea levels.
We sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation.
Two semi-structured interviews were conducted amongst participants enrolled in a trial of a new pre-flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19 months to 18 years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3 months later. Data were analysed utilising the framework approach to thematic analysis.
Seventeen families participated in the first interview with 14 of these families completing the follow-up interview. Three further families participated in the follow-up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub-themes were (1) insight into children\'s lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality.
This population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences.
We sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation.
Two semi-structured interviews were conducted amongst participants enrolled in a trial of a new pre-flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19 months to 18 years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3 months later. Data were analysed utilising the framework approach to thematic analysis.
Seventeen families participated in the first interview with 14 of these families completing the follow-up interview. Three further families participated in the follow-up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub-themes were (1) insight into children\'s lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality.
This population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences.
摘要：
背景：患有神经肌肉无力或中枢通气不足的儿童通常需要夜间通气。患有这些疾病的儿童寿命更长，受影响的儿童人数正在增加。已记录了与在家通风管理相关的挑战；但是，对获得旅行等更广泛体验的调查有限。航空旅行,特别是,对于患有这些疾病的儿童来说，可能被认为是具有挑战性的，因为飞机机舱中的氧气水平低于海平面。
目的：我们试图了解使用夜间通气治疗神经肌肉无力或中枢通气不足的儿童家庭的旅行经历和态度。
方法：对参加一项新的飞行前评估试验的参与者进行了两次半结构化访谈（称为低氧挑战测试）。参与试验的儿童年龄为19个月至18岁。家长接受了采访，并为年幼的孩子提供了代理人意见，鼓励年龄较大的孩子在这些采访中表达自己的观点。评估结束后立即进行了一次面谈,第二个三个月后。利用专题分析的框架方法对数据进行了分析。
结果：17个家庭参加了第一次访谈，其中14个家庭完成了后续访谈。另外三个家庭只参加了后续访谈。这里,我们报告了三个主题，涉及参与者的旅行体验以及他们的状况如何影响。这三个主题及其子主题是（1）对儿童生活的洞察力：医院就诊，获得知识和信心，和孩子作为一个人；（2）与您的孩子一起旅行：飞机，火车和汽车，航空旅行规则,和不确定性；(3)旅行的意义：正常化，与大家庭的联系，扩展的经验，自由和平等。
结论：这些儿童及其家庭渴望旅行，但面临来自临床和社会障碍的挑战。我们必须进一步了解生理状况，社会和文化方面的经验，以促进他们获得更广泛的生活经验。
目的：我们试图了解使用夜间通气治疗神经肌肉无力或中枢通气不足的儿童家庭的旅行经历和态度。
方法：对参加一项新的飞行前评估试验的参与者进行了两次半结构化访谈（称为低氧挑战测试）。参与试验的儿童年龄为19个月至18岁。家长接受了采访，并为年幼的孩子提供了代理人意见，鼓励年龄较大的孩子在这些采访中表达自己的观点。评估结束后立即进行了一次面谈,第二个三个月后。利用专题分析的框架方法对数据进行了分析。
结果：17个家庭参加了第一次访谈，其中14个家庭完成了后续访谈。另外三个家庭只参加了后续访谈。这里,我们报告了三个主题，涉及参与者的旅行体验以及他们的状况如何影响。这三个主题及其子主题是（1）对儿童生活的洞察力：医院就诊，获得知识和信心，和孩子作为一个人；（2）与您的孩子一起旅行：飞机，火车和汽车，航空旅行规则,和不确定性；(3)旅行的意义：正常化，与大家庭的联系，扩展的经验，自由和平等。
结论：这些儿童及其家庭渴望旅行，但面临来自临床和社会障碍的挑战。我们必须进一步了解生理状况，社会和文化方面的经验，以促进他们获得更广泛的生活经验。
